Your young child sees you crying. She asks you why you're on the phone so much. She wants to know why she has to go back to the doctor's and, when she sees an oncologist, why she has to be examined by a stranger.
Your child has leukemia. You've had to digest what that means, and now you need to talk about it with her. How do you do that?
Leukemia and Your Child: How to Begin
Robin Goodman, PhD, director of the Web site AboutOurKids.org and director of Public Education Programs, New York University Child Study Center, says it's OK for parents to look for help in figuring out what to say.
"Parents can use resources like other health care providers so they don't necessarily have to tell children all by themselves," says Goodman, who established the first Child Life Program in Pediatric Hematology/Oncology at Mount Sinai Hospital in New York. A pediatric oncologist should be able to help a parent explain, and groups like the Leukemia and Lymphoma Society have materials online to help parents talk to kids about everything from the initial diagnosis to treatments like stem cell transplants.
Leukemia and Your Child: Clear, Simple Language
Even very young children will be aware that their health is causing anxiety and concern for their family. But parents have to be smart about deciding how much to tell their child and how to relay the information. Consider not only your child's age and maturity level, but also her tendencies toward anxiety and worry, to decide how much and how to tell her. But no matter what you decide, you have to be truthful. Says Goodman, "Kids will know something is going on and, if you're not honest with them, they're likely to imagine the worst possible things. Use language and descriptions that are appropriate for your child's age and understanding, but be honest."
Leukemia and Your Child: What's Age-Appropriate
For children between ages 3 and 5, try to:
- Use very simple language about the illness and repeat the information often.
- Ask your child on occasion if she understands what is happening.
- Let her know how to express her anger, like pounding the pillow or drawing pictures.
- Keep her schedule for naps, playtime, and meals.
- Tell her why you're crying, but keep the explanations simple, such as "I'm a little sad and crying makes me feel better."
For children between ages 6 and 12, try to:
- Reassure your child that she is not at fault for getting cancer.
- Let her know that the anger, anxiety, and sadness she is feeling is normal.
- Encourage her to write down her feelings.
- Help her keep in contact with friends.
- Try to keep her schedule as normal as possible.
For children between ages 13 and 18, try to:
- Include the child in all discussions with medical team.
- Listen for unanswered questions; ask professionals for help with the tough ones.
- Encourage and help her to meet with other patients her own age.
While parents are often worried about the big picture, Goodman says kids with leukemia often worry about kid stuff, like missing school, the way they look, and not being able to play sports or do other extracurricular activities they enjoyed before their diagnosis. Obviously, the child's life will change dramatically, but keep things at home as normal as possible.
"If you treat children like they're fragile, they'll grow up fragile. If you treat them like you're scared, they'll grow up scared. But if you treat them like, this is tough, but they're going to grow up to be upstanding individuals, you'll raise upstanding individuals," she says.
Leukemia and Your Child: Finding Support
Thanks to the Internet, support groups are now accessible to everyone, no matter where they live. Encourage your child, if she's old enough, to look for an online community where she can talk to other kids going through leukemia. Online communities at sites like the Leukemia Society, CancerCare, the American Cancer Society, and Starlight.org are good places to start, Goodman says. For younger children, explore these groups for yourself, so you can better deal with your child's illness and support her emotionally through these times.
Hearing that your child is diagnosed with leukemia will take time to process. If you're not ready to broach the topic with your child when you first get the diagnosis, Goodman says that is understandable. She encourages parents to enlist the help of health care professionals to help them deal with their own grief and anxiety first. Then you will be in a better place to help your child.
Last Updated: 3/27/2009